32-year-old with Cystic Fibrosis Raises Millions for Research

32-year old Emily Kramer-Golinkoff has accomplished more in her life than most people can say. Though she was diagnosed with a life-long debilitating disease as an infant, she has refused to let the fate she was dealt with drag her down. This young woman is the founder of a non-profit called Emily's Entourage. Diagnosed with cystic fibrosis as a 6-week old baby, she has dedicated her life work to raising money to help relieve the suffering of people who are also plagued by this disease.

Emily decided to take her fate into her own hands

In December of 2011, she began a non-profit organization to benefit those who have cystic fibrosis. At the time, though there were some exciting breakthroughs in the treatment of cystic fibrosis, they were limited in the fact that they only helped very specific circumstances in which the chloride channel affected was present but dysfunctional. Unfortunately, Emily had a very rare mutation that is more common with her Ashkenazi background. This variant of disease completely prevents her from making the chloride channel at all. Thus, these breakthrough treatments were useless for her disease.

Emily's disease was rapidly advancing due to lack of options, and she realized that there wasn't going to be any hope unless she created it for herself. That's when she was inspired to start a non-profit to help others suffering too. Emily was inspired to help others in her situation because she realized early on that it was worthless to wallow in things you cannot change. So rather than giving up on life, she refused to let cystic fibrosis prevent her from changing the world.

Emily's Entourage was born

Emily focused her attention on funding research and finding breakthroughs that can save lives quickly. One of the biggest challenges they faced in the beginning was simply the lack of experience she had with fundraising in general. Not only was she new to the game of charity fundraising, but she was also new to the field of science. For a while, they were racing against the ticking clock of her rapidly progressing disease. Though it was a steep learning curve, Emily and her supporters were committed immensely to the task and quickly learned on the job. As a small nonprofit, her organization had the benefits of being very agile and fast, allowing them to work on high-risk projects with high rewards. Emily is proud of the fact that her team is very committed and often think outside the box to get things done in unconventional ways.

Emily's hard work really paid off, literally. Last year, Emily's Entourage raised over 2 million dollars through the support of donors and large gifts. In July, they raised and distributed over 1.4 million dollars and helped fund 5 research grants all over the world. Emily focuses her attention on projects that emphasize goals to speed up the development of new therapies for cystic fibrosis. Emily is so dedicated to the cause that she not only donates money but also her own cells to foster research and find a cure.

The funds have gone towards multiple projects

Some of the projects she has supported have created complicated models using cells and are able to test therapies. Emily has been in close communication with the scientists, and she gets updates every 6 months about the progress. This is much more frequent than the standard annual reports that are expected from other grants in the scientific community.

There are many different strategies being used to discover a cure that will help people with the same rare mutation as Emily. Some focus on building a model that can help with evaluating new therapies, others focus on identifying substances that can target the specific mutation. Some strategies also investigate ways to improve respiratory hydration or reprogram cells to produce a correct chloride channel protein. The goal is to find breakthrough treatments specifically targeted for people who have the Ashkenazi mutation that prevents the production of the chloride channel completely.

Emily shares that having cystic fibrosis can sometimes be invisible. Though she has a very advanced disease and her lungs are functioning at 35%, sometimes her family and friends will comment on how good she looks. She might be having the most terrible day, yet people are unsuspecting because the disease isn't visible all the time.

Emily has much advice to give to other people who are in her situation

As a sufferer of cystic fibrosis herself, Emily has a lot of advice and support to offer to her community. She has much advice for those who suffer from cystic fibrosis. First, she encourages patients to be their own advocate for their health care. Rather than passively relying on doctors and nurses to make all the calls, it's better if patients have a stake in the decision-making process too. Secondly, patients should always be asking questions and learning about their disease. It's important to have open communication between doctor and patient because ultimately, the person with the disease is the patient. They will do better to take care of themselves if they are more knowledgeable about what is happening in their body. Thirdly, it's important for patients to reach out for community support. Having a lifelong illness like cystic fibrosis can be taxing, and no one should be doing it alone. Connecting with others who share similar experiences results in mutual benefit for all parties.

Emily encourages patients to have a positive outlook

In regards to dealing with physical and emotional stress, Emily encourages patients to seek productive outlets to channel their raw emotions. It's okay to feel down and in the dumps from time to time - it's only human. But make sure not to waste your time on things that you have no power to change. Focus on what you can do and how you can make your life better. This is how Emily lives, and how she has found the inner strength to empower others suffering from this condition.

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